Born @ 27 weeks
2lbs 7oz

Tuesday, August 8, 2017

Still Here...

It's Tuesday night. Surgery was yesterday and the hope was to go home today.

The doctors rounded this morning and even after a restless night (Shaw needed some O2 throughout the night and his heart rate dipped to 50 and hovered there from 2am - 5am sounding a constant alarm), the rumor was we were heading home.

Surgery went well. More of the same, really.
They took off the scar in his airway, injected it with steroids and blew up a balloon to stretch his airway, with the hope of increasing air flow.

Anesthesia has always been a bear with Shaw. Not enough. Too much. Never the perfect cocktail. This time, after long and thoughtful counsel, the doctors seemed to nail it and he woke up slowly, but on time and without help.

We seemed to roll into last night on plan and without too many hiccups. Nash was the highlight, as always. They could kill each other at a given moment, but they are lost without the other. Shaw didn't feel comfortable picking a movie that Nash may not have seen. He asked the nurse for an extra treasure for his brother, extra slushy... the list in long.

Nash came to the hospital after a morning of soccer and a full afternoon at the Parkers (Thank you!) with arms spread and filled with questions for Shaw. 
Are you hurt? 
What's an IV?
Did the sleep gas smell like farts? 
What's that 'wire'? 
How do we watch TV?

Later, Nash and Michael left for a restful night at home, while Shaw and I snuggled in his bed and talked about all the awful things we would like to do to the IV that was poking him: "I would run over it 256 times with a monster truck." "Well, I would drop it out of a hot air balloon from 63 floors in the sky." After all of our lovely thoughts, we decided we better keep it because it is helping him feel better.  (Need I say that throughout the night, Shaw could twitch and I would leap three feet to ensure I wasn't rolling onto his IV).

The first thing Shaw said this morning when he opened his eyes...
Mind you, they banged up his vocal chords a good bit yesterday, so he is not allowed to speak for a week (and whispering causes the most stress on the chords)... so in his morning sign language, non-whisper he said, "I feel so much better today."

Cheers from all the neurotic, sleepless voices inside my head.

Fast forward through rounds and discharge and we were headed home! Last step was to remove the IV.

The IV was tricky. Lots of tape. Tape removal ointment. Tugging. Tears. Wailing. Sobbing.

Shaw screamed (with a voice that is NOT ALLOWED TO NOISE) in pain at the removal of the IV.
This is odd for a couple of reasons:
Sadly, his threshold for pain is high. He could have a blister bleeding during a hike and he would never mention it. He could have strep for days and say, "My throat is dry." So to thrash and scream in pain... there was just more.

The truth is, it didn't get hard - until this evening.

Shaw was so upset after the IV that he had a hard time catching his breath. As we were handed the discharge papers, I asked the nurse to check his breathing one last time.
They didn't like what they heard.
They asked us to stay the day.
His airway was tightening.
And finally, invited us to stay another night.

Today, Shaw looked at me directly in the eyes and said, "You lied to me, Momma!"
"You told me I would feel better after surgery."
Silence. (Insert guilt, denial and shame).
"And you said we would spend one night in the hospital."
Then, for the first time in his short, meaningful lifetime, he curled into his pillow and began to sob. Big inconsolable sobs.

All of which IS NOT ALLOWED because it irritates his airway.

As I'm straining to justify that I had no idea we would be staying overnight again and would never lie and never want to let him down ... the drill. The smiley-est nurse comes in our room with a series of three pills of steroids.

She asked me if Shaw could take pills and I admitted we had never had never tried but would.


Shaw, who is typically.... wild, but not tantrum-ish. He holds it together most days and if not, it's usually just a show for his parents (thankfully), which is like a drama class because he will burst into giggles through the crocodile tears.
Not tonight.
Full on whisper screams refusing to take the pills.

And the last straw, the one that literally will be that moment that we all will remember for our lifetimes.
The doctor said Shaw needed a new IV to stay the night.

"This is non-negotiable, " he said.

Meanwhile, Michael and I step into the hallway heatedly debating the role of being his advocate. I erratically think we should 'WALK OUT!" and he level-headed says, "Our son is IN THE HOSPITAL for a reason!" Emotions are high.

Sweet Susan and a walking angel from Child Life approach with a plastic suitcase full of dread and needles. I know the Nee aiV is coming.

Having been called false before, I didn't dance around this one. "Shaw, this is Ms. Susan. She is here to replace the IV. It will likely hurt for a moment but will pass quickly."

Clearly, not the right words.
The truth is, you can't win or lose.
Surgery = legos is a dupe, as much a "This lady is hear to draw blood and cause discomfort."

If Shaw could scream, you would have heard it in Kansas.
Instead, there were kicks and jerks and adamant refusal.
Susan went home.
Shaw did not have an IV.
But the fight was not over.

So, here is the worst part.
Tonight, I promised Nash a slumber party and Daddy would snuggle with Shaw, so we could tag out.

Man, as a parent, you do the best you can, especially without any family. If you leave one, they are slighted and bitter and angry. If you desert another, you weren't there, you weren't enough.

I firmly believe we should all be saving for college and therapy. 

We said our short goodbyes at the hospital, as Ms. Terri breezed in with legos and fresh smiles. (Thank you!)

At home, Nash and I had the best "NashTalk" at bedtime about others showing so much attention to his brother and why ("But Mom, I never got a card when I broke my arm!!")
Did he just say that?
I'm so tired.

Shaw called. I heard him defiantly whisper in the worst, most broken voice, "Hello Mom".
Michael asked if we could FaceTime. (We just left the hospital an hour ago). 
I looked at Shaw and he burst into tears.
"Please come back."
"Honey, I am here to let Meatball out and Nash is asleep. I will be there first thing tomorrow."
Note: These are real. These are from deep fear and exhaustion and anxiety of a six year old that shouldn't know these emotions.
"Please come, Mom."
Broken and hardly forming words, "Shaw, I know Daddy wants to snuggle with you tonight."
"Mom, I'm scared."

Fast forward to this moment, where I'm sitting in front of my computer. Nash is upstairs in our bed because I promised him a Mommy/Nash sleep over (because I feel so much guilt from the surgery and that is super important, too!!!). There just isn't a way to win.

But mark my words. This surgery changed Shaw.
We used to be able to 'disguise' the necessity with distractions, fun names and enthusiasm.
Not anymore. This kid knows and he wants the truth and while we know this isn't the last surgery, we sure as hell hope it is for a while.

Hopeful for a peaceful night for both boys and return home tomorrow.

Thanks so much for all of your thoughtful prayers and support.


stacey said...

You are stronger than you know and doing the most amazing job with those sweet boys. Hang in there kiddo! Praying for you all.

Missy Kohls said...

Oh...prayers being said for the boys and especially you! You are absolutely the best!

Lisa Priest said...

You don't know... until you know... ya know? 😩

Amy Rhodes said...
This comment has been removed by the author.
Amy Rhodes said...

I'm so sorry you all go through this...all 4 of you. It is so hard on each family member. I'm here if you need someone to lean on. I know how hard this is. Hugs and prayers for you all. Hang in there, Mama. You're never alone in this.